Greetings to everyone on this forum. First things first, while my user name may suggest that I am letting Crohn's get to me, I cannot overstate it enough, I am doing everything I can to overcome and thrive as best as I can with my life. I just really like the "my gift is my curse" saying so I decided to flip it around and really hope to be able to help others with a similar condition.
While it is not a curse, it is not an easy thing to live with. I am 28 years old and was diagnosed with crohn's November 2011 from the results of a colonoscopy performed September 2011. While I was diagnosed November 2011, I had my first flare up June 2010 that lasted about six weeks and caused me to go from 163 pounds to 148 (I'm 5'10"). I had been to Jamaica March 2010 so my GP thought it may have been a parasite and thus prescribed me Cipro which worked quite well. Luckily my only symptom at the time was I really couldn't hold anything in and all my bm's became liquid and just about any food I ate came back in the same state it entered my body.
I was completely symptom free for about a year until June 2011 when I had two bms that were entirely blood. Needless to say, I was in need of some answers. That's when I was referred to my GI and set an appointment for the September 2011 colonoscopy. To be really honest, I was actually looking forward to this when I found out that I was going to be able to watch it... And be nicely sedated hahaha. I found the hardest part of the day before being just waiting for the next day. The fasting wasn't too tough (I kept myself busy with video games and movies and staying away from food. Also, if you get a choice, I HIGHLY recommend pico-salax. It is so easy and the taste is very tolerable. I just had to take one sachet at 7am and another at 7pm and it just tasted like a salty orange crush... Not bad in my opinion). During the test, I got to see my insides, made a few jokes (because if you can't laugh about a camera going inside your bum, then what can you laugh at?), watched them take a few biopsies of my insides (which I did not feel at all, very surprised but I understand why. There are no pain receptors inside) and then it was off to have an amazing breakfast and a nap because my test was at 8 am and I didn't eat the day before.
I was scheduled to see my GI for the results on a Monday in November 2011 when the day before I really did not feel well. I had a bunch of people over for the Saturday night college football game between LSU and Alabama which LSU won 9-6 in OT. I did not know of my condition and my diet that day consisted of chicken wings, chips, beer, and more chicken wings. Needless to say that food coupled with being unaware of what I had sparked something in me that I could have never imagined. From that Monday and for the next six days I was in the worst shape of my life. I had a fever of 103 each day, did not feel like eating and when I did, I couldn't hold anything, I would come out as a liquid. I was aching, my head hurt constantly. I would wake up in a sweat and every morning I was coughing up something black. I still hadn't been diagnosed and figured I had a case of the worst cold / flu ever. I ended up losing 15 pounds in a week and had I known more, I would have certainly checked myself into the hospital.
Then I had my follow up to the colonoscopy with my GI and informed him of what I just experienced. He then gave me the diagnosis, to which I responded, "I have what?" I had no idea about crohn's and didn't know what it meant or what I need to do. I received a dvd, pamphlet package and a prescription for Entocort. I had started a couple months earlier to being weight training and get me some muscles for my (now ex) girlfriend because let's face it, Sometimes you just want to do something to get that wink!
Anyway, I was back up to 170 pounds before the flare up and that dropped me to 155. That weight came back so fast, thank you entocort! My appetite was ridiculous and with it being so close to Christmas and even after (I was on it for three months from November 2011 to February 2012), I was eating anything and everything because of the weight I had lost. I was also starting to get to know how my crohn's affected me. I started learning what I could and couldn't eat, drink and couldn't drink and ways to keep myself in remission.
I was then put in Imuran as a means of keeping myself in remission. And of course with that drug, blood tests a plenty! And for myself, I vasovagal when I sit up for blood tests... And apparently when just listening to a nurse talk to me before my colonoscopy (funny story but I'll save that for another day). After my second weekly blood test after taking imuran, my GI called me and told me to stop taking it right away as my liver enzymes were through the roof. After not taking it and a few more blood tests, GI decides an MRCP is an imaging test I need to find out why my enzymes weren't dropping as they should have. After an 80 minute MRCP, it was shown that along with crohn's, I also have PSC (primary sclerosing cholangitis). Good 2012 right?
But there is a good side to all of this. I have managed to take control of my crohn's (as far as I believe), I haven't had a flare up since that week in November 2011, I haven't taken a pill for it since being taken off Imuran. I have kept up with lifting weights (I do it 3 or 4 times a week now) and weigh 195 pounds, which by far higher than anytime in my life. My goal is to help others now with an IBD. It is a shame it has taken me this long to reach out to others but I am more than willing to help anyone with support. I am very happy with what I've been able to do but I do not for once second forget about what is inside me. I have not found some miracle cure or way to end crohn's but I know that not having a flare up for almost 15 months while not being on any meds for the better part of a year is an accomplishment. And believe me, I do understand that something can happen at any moment. If you have read all of this, I am so grateful because this is a pretty detailed log of what I have been through and I am looking forward to reading more people's stories and helping however I can.
I may not have crohn's beat, but I will not let it beat me!
While it is not a curse, it is not an easy thing to live with. I am 28 years old and was diagnosed with crohn's November 2011 from the results of a colonoscopy performed September 2011. While I was diagnosed November 2011, I had my first flare up June 2010 that lasted about six weeks and caused me to go from 163 pounds to 148 (I'm 5'10"). I had been to Jamaica March 2010 so my GP thought it may have been a parasite and thus prescribed me Cipro which worked quite well. Luckily my only symptom at the time was I really couldn't hold anything in and all my bm's became liquid and just about any food I ate came back in the same state it entered my body.
I was completely symptom free for about a year until June 2011 when I had two bms that were entirely blood. Needless to say, I was in need of some answers. That's when I was referred to my GI and set an appointment for the September 2011 colonoscopy. To be really honest, I was actually looking forward to this when I found out that I was going to be able to watch it... And be nicely sedated hahaha. I found the hardest part of the day before being just waiting for the next day. The fasting wasn't too tough (I kept myself busy with video games and movies and staying away from food. Also, if you get a choice, I HIGHLY recommend pico-salax. It is so easy and the taste is very tolerable. I just had to take one sachet at 7am and another at 7pm and it just tasted like a salty orange crush... Not bad in my opinion). During the test, I got to see my insides, made a few jokes (because if you can't laugh about a camera going inside your bum, then what can you laugh at?), watched them take a few biopsies of my insides (which I did not feel at all, very surprised but I understand why. There are no pain receptors inside) and then it was off to have an amazing breakfast and a nap because my test was at 8 am and I didn't eat the day before.
I was scheduled to see my GI for the results on a Monday in November 2011 when the day before I really did not feel well. I had a bunch of people over for the Saturday night college football game between LSU and Alabama which LSU won 9-6 in OT. I did not know of my condition and my diet that day consisted of chicken wings, chips, beer, and more chicken wings. Needless to say that food coupled with being unaware of what I had sparked something in me that I could have never imagined. From that Monday and for the next six days I was in the worst shape of my life. I had a fever of 103 each day, did not feel like eating and when I did, I couldn't hold anything, I would come out as a liquid. I was aching, my head hurt constantly. I would wake up in a sweat and every morning I was coughing up something black. I still hadn't been diagnosed and figured I had a case of the worst cold / flu ever. I ended up losing 15 pounds in a week and had I known more, I would have certainly checked myself into the hospital.
Then I had my follow up to the colonoscopy with my GI and informed him of what I just experienced. He then gave me the diagnosis, to which I responded, "I have what?" I had no idea about crohn's and didn't know what it meant or what I need to do. I received a dvd, pamphlet package and a prescription for Entocort. I had started a couple months earlier to being weight training and get me some muscles for my (now ex) girlfriend because let's face it, Sometimes you just want to do something to get that wink!
Anyway, I was back up to 170 pounds before the flare up and that dropped me to 155. That weight came back so fast, thank you entocort! My appetite was ridiculous and with it being so close to Christmas and even after (I was on it for three months from November 2011 to February 2012), I was eating anything and everything because of the weight I had lost. I was also starting to get to know how my crohn's affected me. I started learning what I could and couldn't eat, drink and couldn't drink and ways to keep myself in remission.
I was then put in Imuran as a means of keeping myself in remission. And of course with that drug, blood tests a plenty! And for myself, I vasovagal when I sit up for blood tests... And apparently when just listening to a nurse talk to me before my colonoscopy (funny story but I'll save that for another day). After my second weekly blood test after taking imuran, my GI called me and told me to stop taking it right away as my liver enzymes were through the roof. After not taking it and a few more blood tests, GI decides an MRCP is an imaging test I need to find out why my enzymes weren't dropping as they should have. After an 80 minute MRCP, it was shown that along with crohn's, I also have PSC (primary sclerosing cholangitis). Good 2012 right?
But there is a good side to all of this. I have managed to take control of my crohn's (as far as I believe), I haven't had a flare up since that week in November 2011, I haven't taken a pill for it since being taken off Imuran. I have kept up with lifting weights (I do it 3 or 4 times a week now) and weigh 195 pounds, which by far higher than anytime in my life. My goal is to help others now with an IBD. It is a shame it has taken me this long to reach out to others but I am more than willing to help anyone with support. I am very happy with what I've been able to do but I do not for once second forget about what is inside me. I have not found some miracle cure or way to end crohn's but I know that not having a flare up for almost 15 months while not being on any meds for the better part of a year is an accomplishment. And believe me, I do understand that something can happen at any moment. If you have read all of this, I am so grateful because this is a pretty detailed log of what I have been through and I am looking forward to reading more people's stories and helping however I can.
I may not have crohn's beat, but I will not let it beat me!
Just to confirm you are also not on any treatment for the PSC? Do you follow any type of diet at all? How often do you have to see you doc for checks up on disease activity?